Spotlight on Rebecca

Rebecca has been the primary caregiver for her husband since 2012 when he had heart surgery to fix a damaged heart valve. After the surgery her husband suffered from a massive stroke that left him with both mental and physical disabilities. Rebecca has struggled to find support, while also finding her own health and wellness deteriorating.

*These responses are from a caregiver based in Toronto. To respect her privacy, we have opted to give her an alias as opposed to using her real name.

Q&A with Rebecca*

Who do you care for?
I am the primary caregiver for my husband.

How long have you cared for him?
I have been caring for my husband since 2012 when he had heart surgery to fix a damaged heart valve. After surgery, he suffered from a massive stroke that left him with both mental and physical disabilities. He ended up being in the hospital for three months and I had to take a six month leave of absence to take care of him.

What tasks are you responsible for?
My husband can walk but his left side has been impacted from the stroke. I dress him, shower him, get his meals. In addition to the physical aspect, the stroke has changed him mentally. He is 50 per cent of who he was in terms of personality. He can be very emotional and has challenges with logical thought. He has problems with numbers and his memory has been impacted. If you didn’t know him before, you might only notice that he has a few issues. But, there has been a massive difference. The stroke has changed him, so I take care of everything else in addition to his care.

As a caregiver, do you receive any additional support?
When we were living in a smaller town, I decided to hire a woman who was taking a PSW course and paid her out of pocket to fill in gaps in my husband’s care. She could come in for a few hours and help. When we moved to Toronto, I declined PSW support. I have used respite care but one of the challenges of the public system is that they need to reassess every 3 months. There are also not a lot of options when it comes to single rooms with bathrooms (which is important for my husband’s condition). The last couple of times respite care was cancelled the night before he was booked to go in. This unreliability makes it hard to plan trips or activities in advance. This past summer, he was in respite care at a private facility, but it was very costly.

Why did you feel you had to move to Toronto to be closer to care?
We moved outside of Toronto 25 years ago for work and the plan was always to come back to Toronto when we retired. We have family in Toronto. Since moving here, we have found a great family doctor. In the past year, my husband has seen a cardiologist, a physical rehab doctor, an Ear, Nose and Throat Specialist, a dermatologist, and a urologist. In a bigger city we just have better access to care. It was a quality of life decision to move back to Toronto.

Was that a difficult transition?
It was a lot of work getting ready to move but it has been a great decision. We are happier in Toronto and living in a condo is safer.

How do you feel your role as a caregiver has impacted your life?
When my husband first came home from the hospital, I thought he would recover. They didn’t say he would be disabled for the rest of his life and I wasn’t prepared to be a full-time caregiver. I was absent a lot during my last four years of work and I really regret that because I loved my job. Also, I always thought that we would be able to travel once we retired but we aren’t able to do that now.My health has also been adversely affected. For a while I wasn’t sure if my husband would survive. But, now I think that he is healthier than I am. We see so many specialists for him that, when it comes to my own health, I don’t want to go to the doctor anymore. Being a caregiver, has also impacted my mental health. Counselors give advice, but they don’t always see the whole story. They recommend that I take a break, but they don’t understand that it’s not as easy as it sounds.

My finances have also been negatively impacted. I took a six month leave of absence after the stroke which meant dipping into our savings. I now need to save money for long-term care. If you’ve been declared a full-time caregiver for a loved one, additional financial support (like a baby bonus) would help you to afford proper care.

What do you think are the barriers to receiving proper care?
The lack of information available on how or where to get support and the policies and limitations around the support available have been the biggest barriers to receiving proper care for us. The day we got home from the hospital after the stroke, we got a call from our Community Care Access Centre. They wanted to send someone to the house right away, but we were just settling in, so I said no for that particular day. They didn’t explain that saying no meant refusing ongoing support, so that was a bit of a mess. I’ve also had negative experiences with respite care. One respite care worker asked why I was bothering to pay for physio if my husband “wasn’t ever going to get better.”

Do you feel that you get access to emotional support/counselling for yourself?
No one offered support. I had to go and seek it out and even then, it was only when my children suggested it. Life has a way of making twists and turns and this is a twist and turn that most people never expect. I just don’t have the energy to find the support. Most support groups out there are for people with family members with dementia. I recently found a course for caregivers through our LHIN that may be helpful.

How do you feel your role as a caregiver should be seen?
I should be seen as one of the most important members of the healthcare team. I am the one who takes care of my husband full-time and who knows him best.

61%

of caregivers admitted they are caregiving because they have no choice.

22%

Spotlight on Caregivers 2018

To better understand the experience of family caregivers in Ontario, we asked 800 caregivers questions about their role within the healthcare system, the type of tasks they are engaged in, the time and financial commitment required, and the impact caregiving as had on their lives.

Please read the Spotlight on Caregivers report to better understand the experience, profile and needs of family caregivers in Ontario.

Learn more through data

Learn more about the data in our survey by clicking on various topics and building your own data visualizations.

The Changing CARE teams with the help of additional experts co-designed surveys to probe the experience of caregivers and the experience of providers. Take a look and adapt the survey and questions at your organization: bit.ly/2FlrsEwpic.twitter.com/fULLtnZReR

Whether you are working side-by-side, collaborating across teams or co-designing between organizations finding your shared purpose allows for a better end result. Determine your shared sense of purpose together to achieve your common goals. #codesigntwitter.com/JodemeGoldhar/…

Regardless of where your organization is in terms of caregiver involvement - building the case, starting the conversation, ready to implement or evaluating the impact - we're confident there's something in our new toolkit to help you out!
Take a look now: bit.ly/2HyePswpic.twitter.com/puR8hKQlF2

We recently surveyed 800 caregivers across Ontario – 71 of who were young carers – and released the results in our Spotlight on Ontario’s Caregivers report. Find out what they said: bit.ly/2QOu1RGpic.twitter.com/wJD0Nl81nV